What if ALD had never found its way into our family?
I used to ask myself this question every day, sometimes several times a day. The answer was so clear. It was sugary and sweet — in technicolor. Without ALD, our family would be perfect, free of fear and any complication.
Eight years into this new life and I have a harder time seeing the answer. It’s buried under piles of experiences, which have all been a least grazed by ALD. The disease is so much a part of our lives that now it almost makes me feel uneasy to think about life without it. As if it’s the disease that holds our family together.
So much has happened with ALD as the center of our family that it has distanced us from who we all were before those letters entered our lives. It sneaks its way into every part of our day and every plan for the future.
Our lives are constantly forced to adapt so that ALD can fit. Whether it’s adding a solid hour to the morning routine or the need for an extra suitcase (for the pee mats and diapers) when we travel – YES – we travel (we’re NOT going to let ALD win completely). We plan every outing taking into account where bathrooms are private and things aren’t too crowded. Jack likes to touch pretty things, including fresh flowers and teenage girls. We always need to be prepared for wandering hands and awkward explanations. Even our future plans have been altered. Discussions about an empty nest have been replaced by talks of single story living and full-time help.
ALD has not been a welcomed guest, but there has been some good that has come out of our unexpected visitor. ALD makes us constantly jump out of our comfort zone and tackle things that we never would have imagined. Jack has adapted remarkably well and lives a life that, despite its complicated challenges, is broad and quite wonderful. Anna is studying science with the goal of stem cell research. I’m not sure that such a thing would have entered her mind without witnessing the power of nature and the power of science. Dan has learned how to juggle a successful career, while being a supportive lacrosse dad and a hands on hiker with his hopping boy. I’ve learned that I’m stronger than I ever realized and have the ability to manage a family under unbelievable circumstances. And, that I am not scared to share the ins and outs of our family’s experiences – not something I would have guessed I would do.
Generally, I’m impressed at how well our family is doing – proud even.
An old friend wrote me a note last week saying, “ . . . it’s crazy how the thing you think is the worst thing in your life, could turn out to be one of the best. The challenge of a lifetime has made you appreciate your family all the more.”
Sweet words, but I’m often quick to fight these kinds of remarks. I want people to understand that this is not the life I would have chosen for our family. That I don’t believe that it’s a gift. I don’t want to confuse the universe into thinking that we are content with all this – WE ARE STILL LOOKING FOR THAT MIRACLE.
But, as time marches on, I do agree that there are things that we need to embrace. Things we’ve learned. Things that have made us stronger, maybe stronger than we ever could have been without ALD. Still, I wonder what our family would have looked like if that little mutation hadn’t set up shop. The problem is that I’m starting to lose my ability to imagine life without our uninvited guest. It seems that ALD has become a permanent part of the family.
Your writing is so powerful.
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You started this journey with us. Thank you for everything you have done for our family.
Wow Jesse. You have gone very deep in this post, asking unanswerable questions, pondering the unspeakable and the unknowable. You touch your pain so that it made me flinch. Thank you for your honesty. You are fierce.
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Spot on Jess!In many ways, I am starting to feel the same way. All the best, Romana x
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It’s bittersweet to have reached this place of acceptance, but I’m okay with it. Time to focus on all the good;-)
“Fierce” is the nicest compliment I’ve ever gotten. Thank you. I hope you are on the mend Liza.
Could soooo relate to your story…Don’t know what life would be like without ALD…Been with us for 24 years. Our son is healthy at 34…can’t walk or talk, but he’s here! We love him. Thanks for sharing your heart!
Only an ALD family can relate to “Our son is healthy at 34 . . . can’t walk or talk, but he’s here!” Sounds odd to some people, but we have a lot to celebrate!!